Interview with Debra Tosca

Debra Tosca was diagnosed with macular telangiectasia type 2 in 2010, at the age of 51.  We spoke about her experience getting a proper diagnosis, adjusting to changes in her visual perception, and participating in the clinical trial.

Debra’s path to receiving the diagnosis of MacTel was not straightforward.  Debra went to see a retinal specialist because her vision was getting blurry, and she was seeing “squiggly lines,” where straight lines did not appear straight.  She was initially told that she had macular degeneration with a retinal bleed, and began receiving intravitreal injections.  After being treated for about two years she switched retinal doctors when she and her husband moved across the country.

Debra’s new doctor questioned her diagnosis of macular degeneration.  He referred her to the MacTel Project study site at the Jules Stein Eye Institute (University of California, Los Angeles).  There, her diagnosis of MacTel was confirmed, and she enrolled in the MacTel Project.  She says of that experience, “I had all sorts of people looking in my eye.  At the time they said there’s no cure, they don’t know what causes it, and they don’t know how fast it will progress.  They said it will only affect my central vision, and it will probably take years.  And that’s where things stood for a while.”

After being enrolled in the MacTel Natural History Observation Study for one year, Debra was told that she was eligible for the ciliary neurotrophic factor (CNTF) safety trial.  This Phase 1 trial was designed to test the safety of the NT-501 implant in patients with macular telangiectasia type 2.  She recalls that the decision to enroll in the trial was a very emotional one, but in the end she decided to participate.

Debra received the implant in August of 2011.  She was concerned that the procedure would cause a temporary decline in her vision, but that has not been the case.  Her vision in both eyes has been fairly stable since the procedure.  As with other participants in the Phase 1 study, the implant was inserted into the eye with worse vision.  Her pupil is smaller in that eye, and she was also bothered by a stitch that caused the implanted eye to itch, but that has since resolved itself.  Her vision never improved in the eye that received the implant, but for a long time (3.5 years) it didn’t get any worse, either.

Debra retired in 2015 because having MacTel was interfering with her job.  Her work involved a lot of driving, starting at 5:30 am when it was still dark outside.  She couldn’t see well enough to drive in the dark.  She was also working with small numbers and letters.  That was very taxing, and she started to make mistakes.

Since her retirement, Debra has spent a significant amount of time pursuing her newfound passion; photography.  She got into photography after her diagnosis, during the summer of 2012, when her husband bought her a professional digital camera.  On becoming a photographer she says, “It sounds ironic, because you’re losing your vision, so why would you become a photographer?”

For Debra, the camera is like her bionic eye.  “I can see so good through the camera lens.  The camera acts like the eye, and it fills in the areas that I can’t see well.  The camera focuses for you, so you don’t have to focus.”  She uses a very big computer screen to enlarge the photos. Seeing the world anew through the camera lens, she says, “I was just amazed.”

As her skills as a photographer grew, she started to seek out new outlets for her photography.  She began to make greeting cards that included some of her photographs and also other artistic cardstock elements.  Making the cards can involve a fair amount of fine detail work, but she enjoys doing it because she can work at her own pace without any stress or pressure.  She still has good spots in her vision that allow her to see well enough to make the cards. Debra sells the cards in local shops and online through her own website and also through Etsy.  She also sells stock photographs. When she started selling cards, she wanted to use the business as a platform to feature eye disease research and highlight the important role it has played in her life.  She donates a portion of her proceeds to eye disease research, and provides links for visitors to donate directly to eye research centers.

In addition to photography, Debra has a passion for seeing the world.  She and her husband make a point of doing something different every weekend, a goal made easier by the diversity of activities available in their new home of California.  “We have a convertible, and we just drive and take pictures.”  They recently returned from trips to Italy and Canada, and are planning a trip to Hawaii. She wants to see the world before she experiences a significant decline in her quality of vision.  Her husband is fully on-board with this plan, and helps make her life as full as possible.  Her passion for photography and travel is the silver lining of her diagnosis of MacTel.  Being diagnosed with a degenerative eye disease motivated her to get out and enjoy life.

Debra has had to make adjustments to her lifestyle as her vision has changed due to MacTel.  She no longer drives at night.  During the day, she drives with the help of a GPS mounted to her dashboard because reading street names from a distance is challenging.  She doesn’t have trouble with blind spots while she’s driving, but does have trouble if the sun reflects brightly off a car in front of her.  That bright flash of light can blind her for a few seconds.  “That’s really scary, so my husband does most of the driving,” she says.

Reading at home is more difficult, too.  “I’ve totally given up on reading books,” Debra says.  However, she has made adjustments to compensate for her reduced vision.  She now listens to books on tape, which she loves.  She has a large iPhone 6S+, and uses a disability app that can make the letters on the screen appear very large.  She doesn’t often type into her phone; she uses the phone’s voice recognition instead.  The large computer monitor makes many tasks at the computer easier to do.

While she feels like she has adapted pretty well, she still has experiences that are challenging. People that don’t know she has MacTel will hand her something and ask her to read it.  “It is embarrassing to say that I can’t really read that,” she says.  So she usually will tell them, “I have an eye disease and I can’t really see too well.”  Similarly, the airport is a scary place because she can’t read lighted boards, so she feels very lost.  Debra doesn’t like to rely on other people yet, though on occasion she finds she has to ask for help.

When asked what advice she would give to someone recently diagnosed with MacTel, Debra had several suggestions:

Definitely go to one of the MacTel registry centers, where they know what they are doing.  I have been to a lot of eye doctors, and they don’t all have the instruments to test and diagnose you.  I would definitely recommend that you go to a place that’s familiar with MacTel, and get the full spectrum of tests.  Get your name on the Registry list.  Join a support group online; there’s one on Facebook and one on Inspire.  Read about MacTel, and even macular degeneration; a lot of the recommendations are similar.  Find ride shares.  I like to stay involved as much as I can so that as my vision changes, I’ll be ready.  I would recommend getting a camera, too.  You really do see better through the camera, once you learn how to use it.

Debra also recommended that people advocate for their own health and vision.  She recalls that she had to take the initiative to convince her doctor to refer her into the MacTel Project, and she feels that she has clearly benefited from her participation.